A Natural Remedy for Lichen Sclerosis

by Christine Kent on March 30, 2010

wwwtvvh-thumbBy Christine Kent

Christine’s article, “A Natural Remedy for Lichen Sclerosis” has been replaced with her new video, The Whole Woman Way to Vulva Vaginal Health”. Just click the link.

Thanks,

Christine Kent

{ 125 comments… read them below or add one }

Jeanne Alexander August 16, 2012 at 3:01 pm

I heard about a stem cell procedure that has helped many. It was started a few years ago by a Dr. in Italy, however, there is a Dr. Nathan Newman, in Bev. Hills, Cal. who does the procedure. You can google him and learn more about this surgery. A lady I met on the Yahoo LS site has had this procedure and is very excited about it. We are in touch on a regular basis and she is reporting her progress. I think this may give us all a lot of hope.
Also, after years sometimes the labia, clitoris, etc. may unfuse naturally. I started using castor oil about 7 weeks ago and notice my labia starting to show more definition and appears to be unfusing. I don’t think I would do the surgery unless the LS affected my bodily functions.

Heather August 24, 2012 at 10:47 pm

Had a Hoodectomy and partial labial removal with extreme pain following surgery. I was pretty well symptom free until a couple of months ago. Have tried all the steroid creams with no success. Will try the Emu oil. Thanks for the information.

Kimea September 1, 2012 at 10:46 pm

I was diagnosed with LS almost 2 yrs ago. I was wondering if anyone on this forum lives near a battery recycling plant,or an industrial area. My sypptoms seem to be linked to this,as the battery plant opened up approx 3 yrs ago. They have failed every EPA emissions test that they have been given,and the EPA has even given them untill 2017 to “Comply” with the EPA standards. I had read a story about a little boy who was helping his Father to repair some boards under his house,and retrieve some items from the crawl space,as his Dad couldn’t fit under the house. The little boy contracted LS,and I Do believe this horrible condition is either Chemical/biohazard related, or environmentally. I also have a horrible skin disorder that won’t go away,with lesions that are extremely painful. Dr tried to tell me that I have a thyroid disorder,but after the dr’s negligence of failing to call in my prescriptions,I fired him, and stopped taking the Synthroid he prescribed. Now, I’m taking a weigh loss suppliment that you can get at any store, and my thyroid is ok. I take the vit B6,vinegar,and kelp. I’m trying to find the Algamath Blue Green Algae,so if anyone knows where I can find this,let me know.( I heard that this is helpful for many memopausal symptoms,and they also seem to be related). I was prescribed a corteosteroid,and it seemed to help with the itching,and redness. I have also had a biopsy,which removed a lesion in my vaginal area. I have the atrophy that a lot of the other posters also have,and I feel “Unprotected” and suseptible to getting more infections. My labia have almost disappeared. I have always had a great sex life,untill 6 yrs ago,when my partner passed away. I swore I would not have any more relations with anyone,untill they found a cure for venereal diseases,and then I somehow contracted this horrible disorder of LS. Now, I have met someone who I would like to have a relationship with,and I can’t even tell him whether I can even Have any relations or not,because I’m not so sure anymore,and I really don’t know.

Worried Mom September 3, 2012 at 3:43 pm

Hi, I am wanting to address the Concerned Mom. My daughter also was diagnosed with LS when she was 5. We have tried the steroid creams & she still has some bad flare ups. I would love to know more about where to get the Emu oil everyone is talking about & should I also give her salmon oil too? I just now read about changing her diet so my first action is to cut down the sugar & remove dairy from her diet. Please any other moms out there please share your story & any help you can give me & my sweet baby girl who is now 7. Thank you.

Aysha September 17, 2012 at 12:00 pm

PLEASE CAN SOMEONE HELP ME???

I have SL and u can’t take it anymore
I’m so self conscious even though it’s on my private on the sides and the pubic area and a little under armpit and tiny tiny all over back n legs although that’s not so noticeable the private part area is and I’m only 18 and I’m do scared I won’t be able to find someone who will want to marry ne knowing I’ve got this disease or even have children !!!! please tell me what shall i do?? I take vitamin C and E everyday I am going to try purple emu oil I have had SL for nearly 3 years now?? please tell me how to make it go? shall I try red clover ??? will it help?? anyone please x

Jenny September 28, 2012 at 11:49 am

I was just diagnosed yesterday with LS. I have only been dealing with the symptons for about a month now. At first I thought I had a horrific yeast infection. I tried Monistat 1 and no relief. A week later I went to Urgent Care (yes, the itching and discomfort was that bad) and he prescibed Diflucan. A week later still no relief. I called to make an appointment with my Gyno and he was booked until October. Fortunately his NP was able to see me. I explained my symptoms in detail, all the OTC creams I had tried (A&D Ointment, Hydrocortisone 1%, Monistat 1, Monistat Cream etc.). She examined me and knew immediately what was going on. She prescribed Clobetasol- Week 1 apply scantily in a “figure 8″ every a.m. and p.m., Week 2- apply every p.m., Week 3 & 4- apply every other p.m., Week 5 and on- apply 1 -2 times a week. I applied the cream for the first time this morning and I really don’t feel a difference. My greatest relief for the past month and still is, is an ice pak. Never apply an ice pak directly to your skin. I have been researching online since she diagnosed me a mere 13 hours ago and the medical websites seem very nonchalant about this disease. I stumbled upon this website and I must say the stories have scared me to death. This is not a future I want at all. I have only been miserable for a month and can’t imagine living this way for very long. I was just married 4 weeks ago. It took me 42 years to find my soul mate and we are very physical. I would rather die then live a life in this kind of pain. I am going today to buy the Emu Oil. I will also be looking to switch up my diet. I am starting the Beachbody Challenge on October 8th so that will increase my exercise. Thank you ladies for sharing your stories. It is good to know that we are not alone in this. I am praying for an asymptomatic lifestyle soon for all of us. Good luck to you all and God bless..

Carol Rainsford September 30, 2012 at 1:29 am

Hi; I’ve just been diagnosed with advanced LS. I haven’t had itching for over 25 years, and was checked for “everything” back then and nothing was found. The diagnosis was a big surprise to me after complaining to my doctor about painful intercourse. It sounds like our immune systems have been damaged & are very confused – as they are now attacking our own cells (LS is a type of skin reaction to something). Go to Wikipedia for a good explanation & read it to the bottom of the page for cures. I would highly suggest cutting out all foods that could be causing allergic/intolerance reactions in your body & don’t rely on allergy tests – listen to your body by keeping a journal of reactions. This will help you fight the LS – give your body some rest from dealing with “foods” that are probably bothering it. It can take minutes to days for reactions to happen and also to clear up; wheat & dairy products are the worse (no matter what the “Low Oxalate Diet” says it has GF (gluten free) recepies too). Please read the books “Allergies: Disease in Disguise” by Dr. Carolee Bateson-Koch and “Wheat Belly” by Dr. William Davis (in libraries – you can reserve it). Also some people out there are into the “Low Oxalate Diet” see http://lowoxalate.info/.

Carrol October 1, 2012 at 12:37 pm

I have had LS for several years now. It has been rough to say the least. But about a year ago I discovered Emu oil by searching online for natural remedies. Thankfully so too, for since I began using the emu oil I have no itching, no irritation and my skin looks much much better than before. I still look blotchy on my genitals, but not nearly as defined as before. It has been the best product I have used. I would recommend it’s use to anyone with LS.

Sam October 2, 2012 at 12:38 am

I have suffered for 14 years with LS and I have tried almost every treatment available, I also have cortisone shots in my labia every 8 weeks, they offer the most help… but they are so painful. I usually get 4 shots on each side of the labia. I just wish people understood how painful LS is. Its so embarrassing to talk about so I’m glad there is someone that understands. …Just wish you guys didnt need to suffer too. Where do i get this oil?

linda October 22, 2012 at 8:17 pm

I also have LS and have had it for several years…I went to my gyn and she did test and said that is what I have…I no longer am able to have sexual intercourse with my husband…which makes both of us very unhappy…I feel that the scarring has caused me narrowing …. I have been on cortizone creme , but don’t like using it, because of the side effects…I also use the emu oil..after reading these stories I am going to try the diet of no dairy or wheat and see if that helps…prob. surgery is the only thing that will help the narrowing, but with no insurance that is not an option right now…if anyone knows something that will help please let me know…I have a very unhappy husband!!

Ruth October 28, 2012 at 3:38 am

I found a low oxalate diet, and my life is almost back to normal. I am excited to say my husband and I are both very happy about it! I noticed results on the first day of the new diet, and it gets better and better with each day. I am expecting a full recovery from LS.

Tom November 2, 2012 at 5:36 pm

I don’t know it is true or not. I was reading on a forum of People who have LS, and a guy said.. he was very hurts by it and tried many things he got worse. And because of the pain he was looking for solution something for week skin which he got because LS and treatments, and found VIVIDA and after one year he got almost healthy. I have LS too . I am thinking to try hat I haven’t done it yet. Now I am trying over 1 g, C Vitamin, I don’t know it helps or not. I have no pain but looks bad. If it doesn’t work I try VIVIDA it is for old women’s skin problem they can have because of the ages.. it gets weeker, something LS can do as well, when it gets white. I am not sure it is good but I will try if nothing is good.

sourav November 20, 2012 at 1:25 pm

hello guys
i am sourav i too have LSA and i am a man….i have a lot of difficulty in finding doctors in INDIA…most of them have never heard about this disease ever….earlier they just clinched money from me but finally i got one doc who atleast diagnosed it as LSA,……..i ll like to know if any indian is here in ths forum as i have connected to 2 more indians whom i know are suffering like me and i can be of help to them and they can help me
my current condition os that though my foreskin is in a better condition as compared to earlier days but my glans i think have got effected…….recently i have noticed that white dead skin type material comes out of my glans i dont know what is it LSA or dermatis…..tommorow i amseeing a doc………………………..this disease is freaking me a lot ….it has been difficult to manage my job and treatment….but still i have to do it.I am 25
Aysha we all share same condition. I have met a girl who has same condition and we discuss over

Amy November 29, 2012 at 1:44 am

For those of you that are desperate and looking for help, THIS IS IT! It’s not easy but its is very doable if you want the itching and the narrowing to stop. As mentioned above LS is an autoimmune disorder and though growing up I never thought in million billion years I would ever suffer from something like this…Im 28…I am now able to see the silver lining. It has led me to get back in touch with my body that is attacking itself due to mine and societys ignorance to what I actually need. Food can hurt..diabetes, obesity, heart disease, high blood pressure etc. OR it can heal. Real nourishing food will be your light at the end of the tunnel. Go PALEO/PRIMAL/GF whatever you want to call it. iF you cant find it in nature than dont eat it. I cant believe that this has even happened to me but after eliminating grains, dairy and sugar the itching has finally stopped. My LS is reversing itself. It’s that easy and that hard. Im sure the emu oil is great and the clob works for some, but I dont know about you, but id rather reverse the disorder rather than deal with the symptoms. Plus youll look and feel so much better. I recommend reading The Paleo Diet Solution by Robb wolf. I find it to be the most user friendly as well as a great read. Its been a journey but Im so glad I’m on it..Ive made big changes and Im the happiest Ive ever been. YOU CAN DO IT TOO! My friend cured her MS by eaiting this way with no meds, she has been in remission for 5 yrs and counting..the only thing she changed was her diet :)

Fiamma December 4, 2012 at 10:38 pm

I was diagnosed with LS about a year ago but believe I have had it since my early twenties. It started as an itch that only occurred during my monthly cycle. I began to think I solely had an allergy to pads but I never imagined this. It’s true that this will ruin your sex life and relationships unless you can find a way to manage it for months. A day doesn’t go by where I don’t have itching, burning, sores or all of the above. My boyfriend is not happy. I’m only 31 and feel that I cannot please him and will not have another man in the future if he finally has enough. I have been on the oily steroid cream alongside diprobase and previously had another. They work for half a day but I worry about their effects. I tried emu oil but saw no difference and hemp oil didn’t work either. What I can’t find is clear concise info on coping mechanisms and diets, there is information overload but most of it is anecdotal or contains methods I have tried. There’s also no consideration for the women who get this condition who are not menopausal and should be in their sexual prime. I am confused and hoping this will just go away.

Veronica January 4, 2013 at 12:21 pm

I’m researching all is that info on LS now. I’ve had it since 2009. Not sure when it first developed, but when I discovered it. My gyn says it’s not an uncommon illness, but I’ve never heard this mentioned amongst anyone. But I am fit to be tied with this illness. Sex is painful. I don’t want to have sex anymore and I am tired of scratching. Like the person that commented above, I hope this goes away, but I know it will not. I feel it is here to stay and I am pissed. I have suffered with depression in the past and wonder if this is going to be something else on my depression circuit. It has spreaded more since I first discovered it and I wonder when will it stop. I also have a white spot on my face, that keeps me reminded that I have it. I’ve had people think that I have food on my face and have offered me a napkin to clean my face. In 2006 I started complaining about the sewer odors where I worked. But the manager of my office said that I was not smelling anything when I reported it to building management. The congressional representative said that it was not her issue. And I just believe the sickness came from inhaling the sewer odors too long. When I left work in 2008, I was really ill and having so much difficulty breathing. I had an enlarged turbinate in the nasal cavity also and no ENT will fix that. They justn kept giving me nasal sprays hoping it will shrink. One ENT even gave me a prescription for a spray that he knewn the insurance company would not pay for. It cost $200.00. I couldn’t afford it, being I had been placed on AWOL for about 6 weeks of being ill. I just want some comfort in that area and in my life. Is PLEASE HELP, a good thing to say.

May Haus January 13, 2013 at 5:57 pm

I am a female in early forties with LS and have pretty much determined that it is linked to both diet and hormone imbalance. I suppose this makes sense when you consider that when hormones decline or are out of whack, it makes the body’s immune system weaker which makes us less able to handle food allergies and intolerances.

I was lucky enough to find experts in LS early on, or at least docs who learned from the experts. Medical community started noticing a link to Estrogen when they found that it went away in girls who had it, after they hit puberty and started getting their periods (and producing more estrogen by this time in life). Testosterone too, has played a key role in topical treatments studied and found to be successful.

It is key to find a doctor who knows what they are doing or willing to read the journals with studies by the experts and not to guess haphazardly or irresponsibly keep you on the wrong type of steroid or too high dosing of the right one, and they must be willing to address hormone and allergy components.

I have managed it fairly well with a compounded estrogen cream and testosterone ointment applied 3 x per week which is what the skin cells would have gotten from my own body’s production when younger. It is imoortant for doctors to research the Mayo Clinic study on this to get the dosing correct when writing the prescription for the compounding pharmacy! This is important!

All the docs I have talked to said that Temovate ( or its generic), is the only steroid cream strong enough to prevent the serious deterioration of the skin over time but that after the initial dosing schedule of Temovate, at frequent intervals, it is important to taper to a maintenance dose of twice per week and then even once per week to prevent steroid induced thinning of skin.
Bioidentical systemic hormones when low, are helpful too. For young women on the bc pill w LS, try going off it and see if symptoms improve.

Diet changes though, as others on here advise, is what I have found to offer rapid and amazing results. Removal of dairy especially,including whey protein offers huge relief withn a few days if not sooner. I too, am about to start Gluten free and attempt a full paleo diet, as the short term experiments I have done with not eating carbs were with good LS results. My mom has nasal allergies and went off gluten and all allergies have gone away so I am hopeful re: gluten and LS…..Also tons of pro biotics!

Michele Orlando March 7, 2013 at 5:18 pm

had ls for 3 months and cannot find any solutions, nothing is working that I have found thru research, I do not know how I am to live the rest of my life in vaginal pain, it is hard to accept, I am going to try doing the diet that was listed above and hope for relief.

katy March 11, 2013 at 3:31 am

I have recently been diagnosed with LS. I was put on steroid for two weeks. I am now trying probiotic yogurt and calendula cream. If I begin mto itch, I put on steroid cream just one time. Am doing much bettter.

peg March 20, 2013 at 4:43 am

I have had LS for 10 years, I take Omega 3 (fish oil capsules) for skin itching. I ,also, use bag balm for COWS!!!, and mix some mineral oil in it to make it easier to spread on my labia area and rectal area for the itching at least twice a day after doing peri care. I was tired of buying the clobetasol cream from pharmacy. Works for me!!!!

patty June 8, 2013 at 12:03 am

My mother has LS, and I was diagnosed in 2006 with LS. I was told that there is no cure, and I have LS because my immune system is attacking itself. WHY? no one seems to know that answer….or if they did then they didn’t tell me!!!

The itching is extreme mostly at night when i’m asleep, and I have tried Steroid creams, Estrogen creams, cortisone, and about every other “cream” you can think of prescribed by a doctor, and NOTHING HAS WORKED to stop the itching!! I have found that plain old VASELINE is the best choices for me, at least for the itching and pain.

As for the fusing of the labia, mine is severe, I am unable to have sexual intercourse anymore. This is quite depressing as i’m only in my mid 40’s. Luckily (I guess), I’m single, so I don’t have to worry about hurting my significant “other”, but it’s very sad to know that i’m going to be alone for the next 40 years (if I live that long!).

I’m glad I found this site because the only people who know about this are my mother, my daughters (in case they get symptoms also), and the MANY doctors who have seen me prior to my diagnosis. I didn’t think there would be many other people in my same situation, so thank you for your stories, and for letting me share mine to get it off my chest!!! it’s nice to know that i’m not alone in this nightmare!!
I HOPE THEY FIND A CURE SO WE CAN ALL HAVE A NORMAL LIFE AGAIN!

Jill June 16, 2013 at 10:00 pm

Greetings my sisters in health. I started having symptoms about 7 months ago. I don’t have itching, but my clitoral hood has adhered with white scar tissue and I have a light white appearance on my Labia. My greatest symptoms were pelvic pain and vestibulitis (tight pants unbearable!)- and urinary urgency/frequency. My greatest relief for the latter has come from a pelvic floor physical therapist. She is experienced, constantly seeking info, and nurturing healing me physically and emotionally on the journey of healing. I Have homework to do which includes tension/release exercises, and dilator stretches. I highly recommend a PT if you have one in your area. I just started using castor oil in mornings and have been using Temovate steroid (i heard from vulva dermatologist it’s more effective than generic if can get your hands on it) at night after a bath (recommended for best absorption). I have Estrace estrogen creme but I’m just beginning to experient with frequency of use. I have eliminated gluten, dairy, corn and soy — all recommended by homeopathic dr. to eliminate for auto-immune disorders. I’ll have to try elimination of sugar too (my weakness). I have been feeling better w diet changes but I can’t say I’ve noticed an impact on my vulva. Perhaps the fact that its not spreading or itching is a sign something is having impact. The greatest challenge and one I welcome to all: SELF-COMPASSION and self love. As my therapist explained, autoimmune disease is our body turning against itself. Shaming ourselves is our minds’ way of turning against ourselves too. Let us let go of fear, grief (over our precious healthy vulvas and impact) and being overly consumed (I admit I have been for months). And replace with feeling supported, not alone, educated, and in our power to research and follow what’s best for us individually. Sharing – but not over sharing – with my partner has helped me feel supported and intimately connected. There are many of ways to be sensual that we have made an effort to enjoy. Blessings to all.

Jackie June 18, 2013 at 4:51 pm

Manuka Honey in the highest concentrate possible – 24 – cost about same in dollars t my health food store will absolute soothe and heal L S symptoms overnight .read up on it and use it. Has peroxide in it. Fabulous to eat and cure all for much.

Lynette McCarthy August 9, 2013 at 2:54 am

Ihave had Lichen Sclerosus for a number of years and I’m in agony every day. I have tried cortisone creams but I’m concerned to keep using them. I’m looking for a natural remedy. I also use testerone patches but they only help for a while.

jan October 17, 2013 at 4:53 am

I found out one month ago quite by accident that I have LS. I had a total hysterectomy in 2006 and haven’t had a PAP since then but went for a GYN exam when I was told I probably had a rectocele. I didn’t even know what it was…the worst thing, my entire labia minora (small inner lips) are completely gone! I had no idea; and my GYN says this could happen to my labia majora (external lips) as well. I’m grateful for the info I’ve found on this site for symptom relief and will try the emu oil. But does anyone know what can prevent it from progressing? I believe I also have it on both of my outer ankles and it’s spreading behind my knees. Also, is it best to see a dermatologist since it’s in other areas? PLEASE, please share websites, supplements and herbal info, doctors (I live in Tampa), anything. It’s painful, it’s embarrassing and I don’t want to be further devastated by it. Thank you.

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